Friday, September 27, 2013

Today was not my favorite day.

Actually, today was a completely craptastic day. Bodie was able to get his picc line, but not until 4pm, after having been npo since 8am since "it's going to happen soon!" (the poor kid spent the better part of the day crying about how hungry and thirsty he was - ah, the joys of hospital life), and after blowing 1 iv and having 2 more unsuccessful stick with finally a successful one following. I was in bed with him, helping to hold him, while 4 or 6 medical professionals held down all 4 of his extremities in an attempt to place an iv solely to get sedation meds in for purposes of his picc line placement.

It.was.awful.

Far worse even than having to hold him while he was put under for surgery. That at least was overwith quickly. This was probably at least 15 minutes of him screaming and thrashing while I helped the doctors hold him down. He was sobbing. I was sobbing. It was something I don't EVER want to repeat.

After they got the iv in, I snuggled him into me, saying "it's ok, Bodie. Mommy is here. Mommy is here." as if that somehow could comfort him. How on earth could that comfort him? Hadn't I just been there, unable to protect him, while doctors were assaulting his precious little body? Hadn't I participated in the assault? I know it was a necessary evil, but even so, my mama's heart is a little lot broken right now.

As a mom, all you want to do is to protect your children, to shield them from the pain in the world. And CHD robs me of my ability to do that. Sure, no parent can truly protect their child from pain. But there are not many parents of 3-year olds who have to be a party to what we've been asked to be a party to over and over.

Now, Bodie is passed out in a bed in the CTICU, on 2 liters of supplemental oxygen and in EAT, from what I can tell. We're waiting for him to wake up to wean down his 02 and send him back to his room in CV Acute. They hit him with a fair amount of heavy sedation meds, so it'll probably be awhile before he wakes up. The nurse just removed the iv in his foot and he didn't even flinch, so I think we'll be here awhile.

As far as the infection itself, the culture has grown a type of staph, either MSSA or MRSA. Our hope is for the former, but, even so, we're looking at a significant course of iv antibiotics. What type of antibiotic, and what duration of the course will be done inpatient vs. at home remains to be seen. We should know more in the next few days, as the culture is finalized and we see how soon the wound itself heals. It's looking better and less inflamed, but even so, there's still a ways to go to it healing completely.

So, today was not my favorite day. Probably not even one of my favorite 100 or 1,000 days. Praying for better days ahead - and a better update once he's back in his room.

10 comments:

Oh, man, Amy. One of the worst experiences I had as a mom was having to hold my daughter (when she was two) while ER doctors gave her two different shots in her cracked-open head BEFORE they put staples in. And I can't imagine having to do that type of thing over and over, day after day. Parenting seems to be chalk full of these heartbreaking moments where we have to do things to our children that hurt because it's ultimately what is best for them. I hate that you all have to go thru this struggle. There just HAS to be some glorious meaning and God-given strength for every single member of your family. I will pray that it arrives sooner rather than later. You guys deserve a break.

Dear Amy, I can't begin to be nearly as eloquent as Megan was in her previous post, but my heart breaks for you as you go through this with Bodie. Your strength is beyond amazing and I just pray that from this moment forward your little one continues improving. Megan said it correctly ... You guys definitely deserve a break.

That's just awful, Amy. How can he possibly understand that all that pain is necessary -- and will help? A terrible feeling as a mom. I am so sorry for this terrible episode. He knows you love him. He always will. Perhaps someday you will tell him this story and he'll say, "Seriously? I don't even remember that, Mom," and he'll roll his teenaged eyes and think "my mom is so dramatic." God bless. Prayers going up for you all. You are a warrior.

I just want to reach out and hug you and Bodie. It's awful that we have to be a party to such dramatic experiences for our kiddos. Since I "met" you and your blog and Bodie, I have been praying for you guys and hope that the wrost is behind you guys. Lots of prayers to get thorugh this one as well . {{{Heart Hugs}}}

Some of my worst experiences in the hospital have been related to finding a vein in Willa. It was when she was 7 days old and it is now at 4. There is no worse feeling than having to watch your child endure pain and have to tell them to be brave. How I wish we could take it for them. My heart goes out to you. My only hope is these days are few and far between in the future. xo

Praying for you all...not a heart mama, but I know that pain...had to leave my 8 yr old son every Sunday for a week of residential intensive speech therapy for three years and they had to peel his arms off me every time. We get through it because we are trying to do the best thing possible for our child. But it is heartbreaking....I'm praying for you.

Father God, thank you for the parent part or your character. Thank you that you can relate to Amy's pain, that you understand. I don't. I can't imagine. So I pray that your would comfort Amy so she can be the mom you created her to be. Speak truth to her by your Spirit, so she will know how you see her and Bodie and this trial. I pray against exhaustion & discouragement. I pray for your hope, love and peace to pervade the space that Amy and Bodie are in, that you would minister these three to their hearts, minds and bodies. Thank you Father that we are healed by Jesus' stripes! I pray for miraculous recovery and healing for Bodie in Jesus' name. I know all things are possible for you, but I don't know your plan. Yet we trust in your goodness, love and grace!

As a heart momma too, I understand each and every word. It is pain like no other, struggling with a wailing child to administer more pain. Even when it is for a life saving cause, it still stings like nothing else. You are strong and Bodie needs you to stay that way and it is hard. So hard. Every stage of a CHD parent presents its new set of challenges. I never thought I would be wishing for the baby days again but sometimes they seem easier, Kalvin's questions are what knock me over these days. Keep the faith. We are sending prayers and happy vibrations your way. You are amazing. xoxo

"For you formed my inward parts; You wove me in my mother's womb. I will gave thanks to you for I am fearfully and wonderfully made; Wonderful are your works, And my soul knows it very well."
-Psalm 139:13-14

The first time my heart walked around outside my body

My rock, the wonderful man on this journey with me

Me

I'm currently a happily married stay at home mom to my beautiful children Sierra and Bodie. Our life's a bit challenging at the moment, but we thank God every day for the opportunity to love our children!

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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."